Topic: Stage III and Verzenio

Forum: Stage III Breast Cancer — You are not alone. Meet others who have Stage III breast cancer.

Posted on: Jan 23, 2021 07:35PM

Posted on: Jan 23, 2021 07:35PM

GraceBer wrote:

I may need to venture into the mets forum for SE coping strategies, but I’m wondering if there’s anyone else who’s been put on Verzenio (vs Ibrance or Kisquali) to prevent recurrence? My MSK oncs and Yale onc (I switched to Yale this past summer) all agreed that I should be put on a CDK 4/6 inhibitor. We waited until this fall (regional recurrence that made me stage III - DXed July 2019), due to finishing treatments and me pushing it off further due to Covid, to start. And though I was originally going to be put on Ibrance I was put on Verzenio due to its positive data coming out of the trial.

Oof! Verzenio has been rough. The Covid silver-lining is that being at home all the time is convenient for my now daily attacks of diarrhea, but I’ve got to get it under control because I want to have a better quality of life (especially in the Covid After Times).

Immodium is pretty effective at stopping the diarrhea after one or two episodes, but it hasn’t been effective used as a preventative. So, I’ve turned to probiotics a week ago. I’m taking a daily capsule of Align and trying to eat some yogurt every day. So far, I’m seeing no improvement with the probiotics.

I’m trying to up my water intake and have supplemented it with the Liquid IV powder (basically, healthier Gatorade - electrolytes with more vitamins and less sugar). That’s helping me with dehydration and keeping labs looking pretty good.

i’m taking 150mg - the recommended dose. If I can’t find a better way to manage the GI side effects, I think we’ll need to reduce my dose.

Ugh! This sucks 😕


Dx 11/26/2013, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/20/2013 Lumpectomy: Left Dx 7/17/2019, IDC, Left, <1cm, Stage IIIC, Grade 3, ER+/PR+, HER2-, Surgery 8/21/2019 Lymph node removal Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall Targeted Therapy Verzenio Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 15, 2021 06:06PM notascalmasilook wrote:

it’s not that difficult.
2 pills = 1 dose of the generic immodium.
Split pill in half.
Take one half pill a day.

Half a pill = quarter of a dose.


Too much I get constipated. Too little I sit near the bathroom all day.

Dx 7/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 4/12 nodes, ER+/PR-, HER2- Surgery Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left) Chemotherapy AC + T (Taxol)
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Dec 30, 2021 10:40AM - edited Dec 30, 2021 11:15AM by kbl

Hello. I have Stage IV, but I wanted to come in here and introduce myself. I am KBL, and I'm here because I did a study with a company called Horowitz, and they are seeking patients who are Stage II or III who are on Verzenio for a study. Since Verzenio is so new to lower stages, they are having trouble finding participants. The lady I worked with is so sweet, I told her I would try to see if I could find anyone willing to participate. It's a paid study and online. If anyone is interested, please private message me and I'll give you her contact information. The study is starting in January.

I have private messaged a few of you, but I thought maybe this would work better.

Thank you.


edited: I now have a flier with info. Private message me if interested. It pays $175

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Dec 30, 2021 12:16PM scaredme wrote:

I just called them and will be participating. Apparently they are also doing another study for caregivers for $175!

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Dec 30, 2021 12:19PM - edited Dec 30, 2021 12:20PM by kbl

Thank you so much, scaredme. Any research that can be done has got to be helpful in the future. I really appreciate it.

KBL (Kris)

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Dec 30, 2021 01:20PM GraceBer wrote:

Are there certain thresholds that have to be met for this study other than being stage II or III and on Verzenio?

Dx 11/26/2013, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/20/2013 Lumpectomy: Left Dx 7/17/2019, IDC, Left, <1cm, Stage IIIC, Grade 3, ER+/PR+, HER2-, Surgery 8/21/2019 Lymph node removal Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall Targeted Therapy Verzenio Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 30, 2021 03:53PM kbl wrote:

Graceber, I will send you the flier in a private message. I do believe you have to be in the U.S.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Dec 30, 2021 08:15PM juju-mar wrote:

KBL, I'd be interested in looking at the flyer. Thanks!

Juli

Dx 8/27/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/4 nodes, ER+/PR+, HER2- Chemotherapy 10/27/2020 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 6/14/2021 Whole breast: Breast, Lymph nodes
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Dec 30, 2021 08:34PM - edited Dec 30, 2021 08:35PM by kbl

Thank you, Juli. I private messaged you.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Chemotherapy 9/27/2021 Other
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Jan 23, 2022 11:36AM homemom wrote:

I asked my MO about this and she said they are giving it to newly diagnosed women to use with the rest of the treatments, it wouldn't do anything for me. Sad

Dx 3/31/2014, IDC, 2cm, Stage IIB, Grade 1, 3/29 nodes, ER+/PR+, HER2- Surgery 4/15/2014 Lumpectomy; Lumpectomy (Left) Surgery 5/6/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Tissue Expander Chemotherapy 5/30/2014 AC Chemotherapy 7/25/2014 Taxol (paclitaxel) Radiation Therapy 10/16/2014 Hormonal Therapy 12/15/2014 Arimidex (anastrozole)
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Jan 24, 2022 05:26PM juju-mar wrote:

homemom,

I've read that it is most effective for the first 2 yrs. I started it once all my other treatment was completed. Good for you to be 7 yrs out from diagnosis! I hope to be able to be 7 yrs out one day!

Juli

Dx 8/27/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/4 nodes, ER+/PR+, HER2- Chemotherapy 10/27/2020 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 6/14/2021 Whole breast: Breast, Lymph nodes

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